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Scleroderma Foundation
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eLetter #831 | September 20, 2019  

FDA Medical Product Approval


FDA Approves First Treatment for SSc-ILD

On Friday, September 6, The U.S. Food and Drug Administration approved Ofev® (nintedanib) capsules to slow the rate of decline in pulmonary function in adults with interstitial lung disease associated with systemic sclerosis or scleroderma, called SSc-ILD. It is the first FDA-approved treatment for this rare lung condition. Ofev is manufactured by Boehringer Ingelheim Pharmaceuticals, Inc. The medication also received Orphan Drug designation.

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YouTube 2019 Microbiome Volkmann

Elizabeth R. Volkmann, M.D., M.S.


Nutrition and the GI Microbiome in Systemic Sclerosis

2019 National Conference Video

Elizabeth R. Volkmann, M.D., M.S., University of California, Los Angeles, presented "Nutrition and the GI Microbiome in Systemic Sclerosis" at the Scleroderma Foundation's 2019 National Conference in Chicago, Illinois.  Her lecture, along with 13 other presentations, was videotaped and is now posted on the Foundation's YouTube channel.

WATCH VIDEO

2019 Conference Award National Volunteer Fidalgo

(L-R): David Murad, Director of Chapter Relations, Scleroderma Foundation, Christina and David Fidalgo, National Volunteers of the Year, and Robert Riggs, CEO, Scleroderma Foundation


Christina & David Fidalgo: National Volunteers of the Year

Christina and David Fidalgo of Oregon were recognized as the National Volunteers of the Year at the Scleroderma Foundation's National Conference in July.  The Foundation simply could not accomplish what it does without the hundreds of volunteers who give their time, and they are all deserving of thanks and recognition.  Christina and David were singled out because they had an impact on almost everyone in the organization. They recognized that the Foundation needed improvements in technology to allow chapter leaders to manage chapter operations efficiently and effectively, and thereby have more time for patient education, fundraising events, and support groups.  Their skills and insight led to implementation of Microsoft Office 365 across the organization. Congratulations Christina and David!

AWARDS

Capitol Hill Day 2019 Group

Scleroderma Advocates at Capitol Hill Day 2019


Capitol Hill Day...Taking it to the Hill!

Volunteer Scleroderma Advocates met Tuesday, September 17 with lawmakers on Capitol Hill to seek support for H.R. 3446 (and its new Senate counterpart S. 2477), The National Commission on Scleroderma and Fibrotic Diseases Act (introduced in the House by Representative Peter T. King, R-NY-2).

You can add your voice to theirs without going to Washington, D.C. Download and sign the letter asking your U.S. Rep to cosponsor H.R. 3446 and mail it to the Scleroderma Foundation, 300 Rosewood Drive, Suite 105, Danvers, MA 01923-1389.

DOWNLOAD, SIGN & MAIL

Education Icon Portrait


Scleroderma Education Programs

Learn Local. Each chapter in the Scleroderma Foundation offers at least one scleroderma education program every year. There are nine now through November in seven different states.

CALENDAR

Michigan Parents Virtual Support October 2019


Medications and the Side Effects: Finding the Best Way to Help Your Child Cope

October 2, 2019, 7:30 p.m. - 9 p.m. Eastern
Kathryn Torok, M.D., Pediatric Scleroderma Clinic, Children’s Hospital of Pittsburgh

Do you wish you knew more about your child’s scleroderma medication?  Do you have questions about what a medication is or what it’s doing?  Join the October 2 Parents of Children with Scleroderma Virtual Support Group to learn helpful tips for finding the most accurate information about your child’s medication.  After registering, you will receive a confirmation email with information to join the meeting.

REGISTER TODAY

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Health Advocacy Summit Group


Health Advocacy Summit

Health Advocacy Summit facilitates day-long, no-cost advocacy events for young adults with invisible chronic and rare diseases. The events bring speakers on topics such as storytelling, navigating school and workplace, overcoming emotional barriers, as well as health policy.

Please visit www.healthadvocacysummit.org to register and follow us on Instagram and Facebook @healthadvocacysummit and Twitter @HA_Summit to keep updated! Please email Sneha at sneha@healthadvocacysummit.org with any questions.

Pulmonary Fibrosis Awareness 30 Facts 2019-09-18


September is Pulmonary Fibrosis Awareness Month

During the month of September, the Scleroderma Foundation will partner with the Pulmonary Fibrosis Foundation to share 30 facts and 30 stories about pulmonary fibrosis on social media.  You can join the campaign by following @pfforg on Facebook and Twitter and with hashtag #BlueUp4PF. 

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World Lung Day 2019 sq Charter


World Lung Day 2019

"Healthy Lungs for All"

September 25, 2019, is World Lung Day, a day for lung health advocacy and action, an opportunity for us all to unite and promote better lung health globally.   Respiratory diseases impose an immense worldwide health burden.

SIGN THE CHARTER

Ticket to Work - WISE 2018


Putting it Together: Healthcare and the Path to Employment

Webinar: September 25, 3 p.m. - 4:30 p.m. Eastern

Curious about how working and earning income will affect your benefits? Join ChooseWork on September 25 at 3 p.m. ET for the next WISE webinar, Putting it Together: Healthcare and the Path to Employment.  The webinar addresses myths about receiving Medicare and Medicaid while working.   In addition to sharing facts on healthcare and the path to work, you’ll also learn about Social Security’s Ticket to Work program and the resources, supports, and work incentives that can help individuals succeed on the path to financial independence. Join the conversation and share the registration link today!

SIGN UP TODAY

myPHteam woman with oxygen mask


myPHteam

Members of myPHteam say that shortness of breath from PH cause them pain and anxiety. How do you manage these symptoms of PH?

JOIN THE DISCUSSION

2019 Stepping Out TriState B


Be Part of the Cure
Join Stepping Out to Cure Scleroderma

Only by raising money can we provide emotional support and disease education to address the needs of individuals with scleroderma today, while fostering research to discover the cause, understand the mechanism, and overcome the disease forever.

Sign up for a Stepping Out to Cure Scleroderma fundraising walk or 5K run near you.  Ask your family, friends, and coworkers to join your walk team and to help you raise money using effective online fundraising tools.

Below are links to upcoming walks.  Online registration typically closes a day or two before the walk date, but you may register on-site on the day of the walk.

Sept. 21Dixon, Illinois
Sept. 29Boston, Massachusetts
Oct.    5:  Kansas City, Missouri

ALL WALKS

 
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Diamond National Sponsor

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Bayer National Sponsor

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Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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